Ethical issues in decision-making and the development of biobanks in Greece


Published: Mar 30, 2026
Keywords:
biobanks ethical issues on biobanking use of human biological material network of biobanks biomedical research
Yulie Foka-Kavalieraki
https://orcid.org/0009-0001-2911-7769
Κaterina Vlantoni
https://orcid.org/0000-0003-2334-735X
Abstract

Biobanks have emerged as a critical infrastructure for the advancement of biomedical research in recent decades. In this article, we attempt to examine the ethical issues associated with their operation in a twofold manner. In the first part, we present the ethical issues surrounding the development and functioning of biobanks by reviewing the relevant literature. We then analyse how these ethical issues are addressed in regulatory texts, focusing particularly on the recent opinion of the Greek National Commission for Bioethics and Technoethics, as well as the opinion of the European Group on Ethics in Science and New Technologies. In the second part, we turn our attention to the views of professionals directly involved in biobanks in Greece. Through an empirical study of biobanks’ operation, we focus on the experiences and perspectives of professionals in the field concerning the ethical and regulatory challenges they face in their daily practice. Our study is based on archival material and interviews with professionals working in Greek biobanks. In doing so, we highlight their own positions as stakeholders in the ongoing debate. We argue that this approach is essential for bringing to light the ethical and social issues faced by biobank professionals—issues that are often overlooked in related discussions.

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Zika E, Paci D, Schulte In Den Bäumen T, Braun A, Rijkers-Defrasne S, Deschênes M, Fortier I, Laage-Hellman J, A. Scerri C, Ibarreta Ruiz D. Biobanks in Europe: Prospects for Harmonisation and Networking. EUR 24361 EN. Luxembourg: Publications Office of the European Union, 2010.
Gottweis H, Petersen A. Biobanks and governance: an introduction. In: Gottweis H, Petersen A (eds) Biobanks: Governance in comparative perspective. Routledge, London and New York, 2008: 3-21.
Kaye J, Briceño Moraia L, Mitchell C, et al. Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts. Biopreserv Biobank 2016;14(3):201-206. doi:10.1089/bio.2015.0124
Hoeyer K. The Ethics of Research Biobanking: A Critical Review of the Literature. Biotechnology and Genetic Engineering Reviews 2008, 25(1): 429-452, στη σελ. 433. https://doi.org/10.5661/bger-25-429
Cadigan RJ, Lassiter D, Haldeman K, Conlon I, Reavely E., Henderson G.E. Neglected ethical issues in biobank management: Results from a U.S. study. Life Sciences, Society and Policy 2013, 9:1.
Knoppers BM, Saginur M. The Babel of genetic data terminology. Nat Biotechnol 2005, 23: 925–927.
Kegley J.A. Challenges to informed consent. EMBO Re 2004, 5: 832–836.
Bledsoe MJ. Ethical Legal and Social Issues of Biobanking: Past, Present, and Future. Biopreserv Biobank 2017, 15(2): 142-147.
Annas GJ, Glantz LH, Roche, PA. Drafting the Genetic Privacy Act: science, policy, and practical considerations. J Law Med Ethics 1995, 23: 360–366.
Critchley CR, Nicol D, Otlowski MFA, Stranger MJA. Predicting intention to biobank: a national survey. European Journal of Public Health 2012, 22(1): 139–144.
Slokenberga S, Tzortzatou O, Reichel J. (eds). GDPR and Biobanking. Law, Governance and Technology Series, vol 43, Springer, Cham, 2021.
Elger BS, Caplan AL. Consent and anonymisation in research involving biobanks. EMBO reports 2006, 7:661-666 .
Peloquin D, DiMaio M, Bierer B, Barnes M. Disruptive and avoidable: GDPR challenges to secondary research uses of data. European Journal of Human Genetics 2020, 28:697–705.
Lin Z, Owen AB, Altman R.B. Genomic Research and Human Subject Privacy. Science 2004, 305(5681): 183.
Bledsoe MJ, Sexton KC. Ensuring Effective Utilisation of Biospecimens: Design, Marketing, and Other Important
Approaches. Biopreserv Biobank 2019, 17(3):248-257.
Klingler C, von Jagwitz-Biegnitz M, Baber R. et al. Stakeholder engagement to ensure the sustainability of biobanks: a survey of potential users of biobank services. Eur J Hum Genet 2022, 30: 1344–1354. https://doi.org/10.1038/s41431-021-00905-x
Συμβούλιο της Ευρώπης. Σύμβαση για τα Ανθρώπινα Δικαιώματα και τη Βιοϊατρική. Σειρά ευρωπαϊκών συνθηκών - ETS αριθ. 164, 1997. https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164
Locock L, Boylan AM. Biosamples as gifts? How participants in biobanking projects talk about donation. Health Expect. 2016, 19(4): 805-816.
Árnason V. Coding and Consent: Moral Challenges of the Database Project in Iceland. Bioethics 2004, 18: 1467-8519.
O’Neill O. Some limits of informed consent. Journal of Medical Ethics 2003, 29 (1): 4-7.
Ploug T, Holm S. Meta Consent – A Flexible Solution to the Problem of Secondary Use of Health Data. Bioethics 2016, 30(9): 721–732.
Lajonchere C, Naeim A, Dry S, Wenger N, Elashoff D, Vangala S, Petruse A, Ariannejad M, Magyar C, Johansen L, Werre G, Kroloff M, Geschwind D. An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study. J Med Internet Res 2021, 23(12): e31121. doi: 10.2196/31121.
Solberg B, Steinsbekk KS. Biobank consent models – are we moving towards increased participant engagement in biobanking?. Journal of Biorepository Science for Applied Medicine 2015, 3:23-33.
Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet 2015, 23(2):141-6. doi: 10.1038/ejhg.2014.71.
Petersen Α. Biobanks: Challenges for ‘ethics’, Critical Public Health 2005, 15(4): 303-310. DOI: 10.1080/09581590500523178
Ελληνική Δημοκρατία, Εθνική Επιτροπή Βιοηθικής & Τεχνοηθικής. ΓΝΩΜΗ για τη χρήση ανθρώπινου βιολογικού υλικού στην έρευνα και την ίδρυση βιοτραπεζών. Ιανουάριος 2023. Διαθέσιμο σε https://bioethics.gr/api/files/download/2249/Opinion%20Biobanks_GR_FINAL.pdf
Εθνική Επιτροπή Βιοηθικής. ΓΝΩΜΗ για τις συλλογές ομφαλοπλακουντιακού αίματος. 2007. Διαθέσιμο σε https://bioethics.gr/opinions%20reports-13/sullogesomfaloplakountiakou-aimatos-82
Εθνική Επιτροπή Βιοηθικής. ΕΙΣΗΓΗΣΗ για τις τράπεζες βιολογικού υλικού (βιοτράπεζες) ανθρώπινης προέλευσης στη βιοϊατρική. 2006. Διαθέσιμο σε https://bioethics.gr/opinions%20reports-13/trapezes-biologikou-ulikou-107
European Group on Ethics in Science and New Technologies. Opinion on the ethical aspects of human tissue banking. Report no. 11 on Human Tissue Banks. 1998.
European Commission, Directorate-General for Research and Innovation. Biobanks for Europe – A challenge for governance. Publications Office, 2012. Διαθέσιμο σε https://data.europa.eu/doi/10.2777/68942
Tzortzatou O, Siapka A. Mapping the Biobank Landscape in Greece. In: Slokenberga S et al. (eds.) GDPR and Biobanking,Springer, 2021: 291-307.
Yuille M, van Ommen GJ, Bréchot C, Cambon-Thomsen A, Dagher G, Landegren U, Litton JE, Pasterk M, Peltonen L, Taussig M, Wichmann HE, Zatloukal K. Biobanking for Europe. Brief Bioinform 2008, 9(1): 14-24. doi: 10.1093/bib/bbm050.
Salminen-Mankonen H, Litton J-E, Bongcam-Rudloff E, Zatloukal K., Vuorio E. BBMRI The Pan-European research infrastructure for Biobanking and Biomolecular Resources: Managing resources for the future of biomedical research. EMBnet News 2009, 15(2): 3–8.
«Μελέτη Σκοπιμότητας για την Ανάπτυξη Εθνικού Δικτύου Ελληνικών Βιοτραπεζών», Ίδρυμα Ιατροβιολογικών Ερευνών της Ακαδημίας Αθηνών, 2010, σελ. 4.
European Commission, Directorate-General for Research and Innovation. Support to Greece for policies developing research infrastructures and the R&I ecosystem. Final Report. Directorate-General for Research and Innovation, Horizon Europe Policy Support Facility, 2022. Διαθέσιμο σε https://gsri.gov.gr/wp-content/uploads/2022/10/Support-to-Greece-for-policies-developing-researchinfrastructures-and-the-RI-ecosystem.pdf
Litton J-E. Launch of an infrastructure for health research: BBMRI-ERIC. Biopreservation and Biobanking 2018, 16(3): 233–241, στη σελ. 240. https://doi.org/10.1089/bio.2018.0027
Αποστολόπουλος Α, Θάνος Δ, Χατζάκης Α. Η συμβολή των βιοτραπεζών στην υγεία, στην οικονομία και στην έρευνα. Αρχεία Ελληνικής Ιατρικής 35(3): 358–363.
Aarden E. Infrastructuring European scientific integration: Heterogeneous meanings of the European biobanking infrastructure BBMRI–ERIC. Social Studies of Science 2023, 53(4): 572-598, στη σελ. 593. https://doi.org/10.1177/03063127231162629
Argudo-Portal V, Domènech M. ‘We came here to stay’: Making biobanks worth maintaining in Spain. Sociology of Health & Illness 2022, 44: 328–344. https://doi.org/10.1111/1467-9566.13420
Metzler I, Ferent L-M, Felt U. On samples, data, and their mobility in biobanking: How imagined travels help to relate samples and data. Big Data & Society 2023, 10:1. https://doi.org/10.1177/20539517231158635